Newly diagnosed with melanoma on scalp – just had a baby, very nervous

heh JW. your pathology is too complicated for me to comment on, but soon enough you will get some pretty expert responses.

posters has been a little thin this week for whatever reason so have patience.

Hey,

Sorry you are going through this. I can understand the nerves – I was diagnosed about 8 months ago. I will say that my condition was likely much worse than yours and I’m still doing fine :). I’m not a doctor, so I may not have everything right. I’m sure someone will explain better than I, but typically we see depth as a big factor in risk. mine was around 3.5mm, and yours looks to be at least .9. No ulceration is very good (mine was). Also no lymphovascular invasion is also good – it means they can’t detect any melanoma cells in the lymphatic vessels next to your melanoma I believe ( also had this, which is bad haha). Pernieural invasion is kinda like lymphvascular invasion, but for nearby neurons(I believe). Finally, tumor regression is interesting. I don’t think we have any answer of whether it is good or bad. It means that the tumor is regressing (going away kinda?).

My path will likely be similar to yours, though your chances are, right now, quite amazing. Basically the surgery is pretty easy, you won’t remember any of it since you’ll be under. I did prescans to make sure things weren’t spreading, consisting of an MRI, CT, Chest X-Ray and blood work. The worst part about those is the anxiety for sure. Just know the odds are really in your favor. The day of surgery I had the CT scan where they traced the lymph node path. The injection hurt a bit, but the rest was just laying there until things drained. The surgery day was mostly just waiting around. They took part of my ear and 4 lymph nodes. Mine was near my neck so my neck was numb. It actually helped a bit because I had not surgery pain and didn’t even need pain medication. Likely the most sore part will be where they take the skin graft from. Beyond that they’ll test whatever lymph nodes they take and you’ll officially get staged. I was staged 2b, which is the highest local category. Technically there are not treatment at this stage so it is really just watch and see. You will have more monitoring visits and may have scans, probably yearly, to make sure all stays well. I did a clinical trial and it’s required some driving, but that’s about it.

Honestly I’ve had lots of scares, where I thought melanoma was back. But nothing had turned out to be melanoma. So really the worst part of this whole experience so far has been anxiety. I understand the kids things as mine are quite young as well. About the only issue I have now is that my neck is tight on occasion and still a bit numb near my ear. It’s also worth thinking about something like a counselor or even anxiety medication, especially to get your through these early months.

so yeah, your in the doc’s office and he is telling you alot of things. Ur reassured. Then you leave and start thinking of the questions you now have.
2 thoughts…write down what you have now . Also if your doc has a patient portal you can pose questions there and get answers back pretty quickly< Its basically a website for appointments and such, but confidential and most docs, clinics and hospital have them. i use them alot . I had mouth soreness, sent an email thru Patient Portal and teh onc called pharmacy for suitable prescription within hours. otherwise it would have taken days get this guy on the phone. just as boatski said, my SLNB procedure was a breeze, being asleep for most of it. no lingering after effects after 4 axial LNs removed. you mentioned surgeon, and i guess you are referring to an oncological surgeon. Mine was extremely informative. Not all oncs are melanoma specialists but onc surgeons are onc surgeons and should quite capable at removing LN's without complications. indeed the strategy is to do nuclear scan(SPECT) which involve radio active die, to determine location of involved LNs, remove, and then do the WLE . both operations should take place together. lyphomscintigraphy is a very complicated word to describe mapping the lymphatic system using the above mention die. SLNB is the removal of the LN. Mostly we talk about SLNB or LNB because that it the actual removal of the cancerous LNs. and, which is what we care about. Its also alot easier to spell. there is risk of lymphodema from any LN removal and my oncological surgeon discussed with me in great detail the choice between removing only involved LNs and say all of them from a region In my case the axial region(armpit) . The more LNs removed, the more risk there is for lymphodema. I had 4 removed and have had no problem. i think there may by 14 or so more in the one axial region and there was the idea to remove them all as a precaution. So you balance future LN involvement vs. lymphedema. My onc surgeon left that decision in my hands and i decided to minimize risk of lymphedema. I was going to get immuno drugs anyway, so if there were a few melanotic cells undetected in other LN's , my hope and reasoning was the therapy would destroy them. Lymphedema even though treatable just didn't seem like something i wanted to risk. its very important that you understand, i am not saying i was right or that that was the best medically sound decision, its just the choice i made for myself.

Hello,

I am not the patient but I wanted to give you some hope. In 2008, when there weren’t the options there are today my husband had a 10.5 mm Melanoma removed off of his scalp. His WLE was 10.5 cm and his SNL was negative. He had the skin graft which he said was the worst part of the procedure as far as pain. He had several more surgeries because there was nothing for Stage III at that time. He proceeded and became Stage IV in Oct. 2010 and started a clinical trial in March of 2011. He became NED (no evidence of disease) in July 2012 and has remained that way since which is over 8 years. If you would like to read more check out his profile.

The now have treatments for stage III which they did not when he was diagnosed. And a lot more treatments to consider. He is still going strong and his age was much older. So here is hoping you will find something that is successful for you and live a long life and watch those children grow up and do lots with them.

Judy the loving wife of Gene Stage IV and with a clinical trial of Ipi (Yervoy) and GMCSF he has been NED for over 8 years.

Congratulations on the new baby, because that is what really matters. I hope this pesky business on your scalp doesn’t color your time with your infant. My youngest was two and still nursing when I had my initial melanoma removed. It was a truly terrifying time. Couple of notes it sounds like you are receiving the standard of care and things are moving along. Try, as much as possible to refrain from googling melanoma,a information because almost all of it is outofdate unless it is a dedicated melanoma site. Also try to not borrow trouble. I was able to nurse my infant the same day as my WLE and I came home that day. My ugly, nasty wound on my neck healed beautifully. My neck is a little stiff from four lymph nodes being removed but not really noticeable. I was stage 2B. About five years later my Brian met and minor additional spots were found and I was stage IV.